[blparent] Feds Fault Preemie Researchers For Ethical Lapses

Mon Apr 15 15:36:29 UTC 2013

	My folks had babies when yours did Melissa. They were amazed at the
changes. 
I think the idea was that Mom should rest because when she went home with
the new baby, she'd need that bank of sleep to help her through. 

-----Original Message-----
From: blparent [mailto:blparent-bounces at nfbnet.org] On Behalf Of Melissa Ann
Riccobono
Sent: Friday, April 12, 2013 8:19 PM
To: 'Blind Parents Mailing List'
Subject: Re: [blparent] Feds Fault Preemie Researchers For Ethical Lapses

What a fascinating story.It's amazing how far the medical field has come
even with full term babies in the last thirty years or so. When I was born
in 1978, (as a full term baby, by the way) dads were just starting to be
allowed in the delivery room. My dad saw me born, and my mom said the nurses
were more freaked out that he was going to pass out or something so she
didn't feel as if they were paying much attention to her--the woman having
the baby. Also, any visitors to the hospital, except immediate family, could
only look at babies from behind glass. Nurses took care of babies in the
nursery. My mom was one of the few who breast fed at the time--most mothers
were told to bottle feed, and some were even given injections to dry up
their milk without their knowledge. Anyway, because she chose to breast
feed, my mom had regular contact with all of her kids while in the hospital,
but I don't know how it worked for those moms who bottle fed their babies.
My mom said she would be given the baby to nurse, but as soon as the baby
was done eating, he or she was taken a way. I can't imagine being sent home
with a baby I had so little contact with from the beginning of his or her
life.
Now, of course, we have dads cutting cords, and even other family members in
the delivery room who can watch and assist with the birth. We have rooming
in, and most of the time anyone can see and hold the baby, as long as he or
she is above a certain age. I'm so glad this type of progress has been made
for full term and premature babies alike!
Melissa 

-----Original Message-----
From: blparent [mailto:blparent-bounces at nfbnet.org] On Behalf Of Jo
Elizabeth Pinto
Sent: Friday, April 12, 2013 7:15 PM
To: Blind Parents Mailing List
Subject: Re: [blparent] Feds Fault Preemie Researchers For Ethical Lapses

I do know they've come a very long way in preemie care since I was born in
1971.  When I popped out, the bag of waters hadn't broken, and the way my
mom tells it, they just brushed me aside and started taking care of her. 
Then one of the doctors saw my feet kick in the sack out of the corner of
his eye, and he said, "Oh, I guess the baby isn't dead."  So they ruptured
the bag and showed me to my mom.  Sixteen inches long, two pounds and two
ounces,nothing but skin and bones.  She said I looked like a Rhesus monkey. 
The doctor told her not to get attached because I wouldn't live through the
hour.  My dad got there, having been summoned back from a short business
trip, and they arranged an emergency baptism.  I wasn't supposed to live two
hours, then four, then I'd never make it through the night.  I understand
the grim predictions were meant to shield my parents somehow, but my mom
took the warnings of the doctors to heart and didn't get attached, and I
honestly think her holding back emotionally did lasting and permanent harm
to our relationship.

I went into the incubator, not to come out for the next few months at all. 
Nowadays they encourage parents to touch their babies through the ports in
the incubator if possible, and they have skin-to-skin contact and kangaroo
care so the babies can be held and carried around while still hooked up to
the oxygen.  A friend of mine had a preemie and described it all to me a few
years ago.  But when I was born, standard procedure was to protect the baby
from possible infection by touching as little as possible, and then only by
the hospital staff.  Because of that, a lot of babies who spent a long time
in incubators developed an aversion to touch, and their parents had trouble
bonding with them when they came out because they'd spent a few months
watching the baby under glass but had virtually no contact.  My mom said
when it was time for me to leave the hospital, a nurse got me out of the
incubator, wrapped me up, and handed me to her, and her first thought was,
"What am I going to do with that?"

Then too, the effects of the oxygen weren't completely understood, so my
eyes weren't tested.  My mom took me home, and I didn't want to be touched
or held, partly because I wasn't used to it and partly because I couldn't
see anyone coming at me, so I was just scooped up out of nowhere.  She said
I would fight and scream and try to wriggle away from people.  Hardly the
stuff of bonding.  They didn't know I was blind till months later.

Sorry for the novel, but I hope other people share.  This is fascinating to
me, and especially the progress that has been made over the last forty or
fifty years or more, because with any luck, things are very different now.

Jo Elizabeth

Truth is tough. It will not break, like a bubble, at a touch; nay, you may
kick it about all day like a football, and it will be round and full at
evening.--Oliver Wendell Holmes, Sr.
-----Original Message-----
From: Star Gazer
Sent: Friday, April 12, 2013 2:10 PM
To: 'Blind Parents Mailing List'
Subject: Re: [blparent] Feds Fault Preemie Researchers For Ethical Lapses

Thank you. This intrigues me.
Anybody else want to share? I like learning how things were done back in the
day as to how they are now.

-----Original Message-----
From: blparent [mailto:blparent-bounces at nfbnet.org] On Behalf Of Sheila
Leigland
Sent: Friday, April 12, 2013 4:04 PM
To: Blind Parents Mailing List
Subject: Re: [blparent] Feds Fault Preemie Researchers For Ethical Lapses

Hi, my mother never said to much except I was in an isolet and I was never
out of the oxygen until the day I went home from the hospital after being in
the hospital for almost three months.

Sheila Leigland

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